Given bodily experiences such as chest pain, fatigue, and breathlessness, many patients with congenital heart disease (CHD) live “at war with” and “against the body” (Gantt, 1992, p. 246). Few researchers have employed qualitative research designs to investigate the physical activity experiences of youth with CHD. Drawing on critical disability studies, and the arts-based qualitative methodological tradition, I explored the activity experiences of 17 youth with severe CHD. Most youth portrayed themselves as “passive on the periphery”, that is, they saw themselves as excluded in current physical activity spaces. A few youths did not see their bodies as different and suggested that social stereotypes that construct youth with CHD as unable to be active are problematic. A final group of participants viewed their bodies as non-normative and saw themselves as personally responsible for change. The findings illuminate the contributions of the arts-based-research tradition to better understanding CHD youth’s physical activity experiences. The findings also point to the importance of the social and cultural world to understanding their active pursuits. Since most youth with CHD view themselves as “passive on the periphery”, this may serve as a call to researchers, clinicians, and physical educators to better attend to their unmet physical activity needs.

考虑到诸如胸痛，疲劳和呼吸困难之类的身体经历，许多患有先天性心脏病（CHD）的患者生活在“与之抗争”和“对身体不利”的生活中（Gantt，1992，p.246）。很少有研究人员采用定性研究设计来调查患有CHD的年轻人的身体活动经验。借助严重的残疾研究和基于艺术的定性方法学传统，我探讨了17名患有严重冠心病的青年的活动经历。大多数年轻人将自己描绘成“对周围事物被动”，也就是说，他们认为自己被当前的体育活动空间所排斥。少数年轻人认为自己的身体没有什么不同，并提出使成年冠心病无法活跃的社会定型观念存在问题。最后一组参与者认为自己的身体不规范，认为自己应对变化负有个人责任。这些发现阐明了基于艺术的研究传统对更好地了解冠心病青少年身体活动经验的贡献。研究结果还指出，社会和文化世界对于理解他们的积极追求至关重要。由于大多数患有冠心病的年轻人认为自己是“被动的”，因此可以呼吁研究人员，临床医生和体育教育者更好地满足他们未满足的体育活动需求。研究结果还指出，社会和文化世界对于理解他们的积极追求至关重要。由于大多数患有冠心病的年轻人认为自己是“被动的”，因此可以呼吁研究人员，临床医生和体育教育者更好地满足他们未满足的体育活动需求。研究结果还指出，社会和文化世界对于理解他们的积极追求至关重要。由于大多数患有冠心病的年轻人认为自己是“被动的”，因此可以呼吁研究人员，临床医生和体育教育者更好地满足他们未满足的体育活动需求。